Dear Carol,

Your grandson's longterm height issues really have more to do with what he's lost due to undersuppression and advanced bone age, rather than the current slow down/stoppage of growth due to oversuppression.  That is not good, either, of course, so I think sorting through the different issues with his ped. endocrinologist is a really good idea. 

I really feel that there are many improvements that can be made in your grandson's current medication regimen, that could improve things in the short term. The goal would be to get him in control, on much less medicine.  I would talk to the doctor immediately about getting rid of the prednisone right before bedtime; changing the dosing around so that the largest amount is given in the morning; and seeing if the dose of florinef needs to be increased. 

Has the doctor shared with your daughter your grandson's adult height prediction, relative to what he might otherwise have been expected to achieve genetically?  Based on his current size and bone age, I am sure it is, unfortunately, pretty poor.  You can kind of get an inkling by seeing where he would be on the growth charts, if his bone age were his real age, at his current height.  As I said, at 46", he is very tall for a 5 yo.  But if he were 9 yo. (his current bone age) at this same height, it would mean that he is not even on the charts.

Whether or not he is a candidate for growth hormone therapy, as a result, is a whole different issue.  His basic medication and control issues need to be addressed, either way, so I would probably start by doing that.  In the meantime, your daughter can look further into growth hormones and decide if they are worthwhile pursuing. At any rate, I would be leery of having the ped. endo pressure her into a decision on growth hormone therapy, before the basic control issues have been resolved.

Growth hormones are generally considered safe (so you don't really need to worry too much about the warning on cancer, probably leukemia, that your daughter was given), but they can make control in the CAH patient much more difficult.  As I said earlier, growth hormones can interfere with the rate at which the body metabolizes cortisol replacement medication (such as hc, prednisone, and dex), resulting in extremely rapid undersuppression and the need for progressively larger and larger doses, in a very short period of time.  For a child who has had a history of control problems, that may be something to keep in mind.  Also, the problem with putting him on growth hormones with the current endo is that, if he is not doing such a great job the way things are, I wonder if he would be equipped to handle the added complexity of yet another drug to manage.  

I know this is a lot to digest, and most of it not very welcome news.  If you'd like, feel free to contact me directly via email with any other questions.